Overcoming Chronic Illness

The soft smells of antiseptic grew stronger as my skinny, fatigued body lay motionless on the white sheets. Cold IV fluids pumped through my veins, and a nasogastric tube transported nutrition to my neglected stomach. Monitors endlessly beeped throughout the long summer nights as my heartbeat dropped well below its average rate. Nurses regularly came in with a myriad of medications for my tiny frame to consume while doctors attempted to construct a plan for my future healing. My life was nothing like what it was seven months prior. I was a healthy, active, and carefree teenager with enormous educational and athletic ambitions. But my dreams seemingly turned into fantasies after my diagnosis. My incurable autoimmune disorder, Systemic Scleroderma, slowly destroyed my mind and body and altered the person I was and wished to become. However, I did not surrender to my battle and fought through my circumstances with perseverance. Although my diagnosis transformed who I was as a teenager in high school, it encouraged me to become who I am today: a strong, compassionate young lady dedicated to helping others.

Before my diagnosis, I was energetic and ate everything in sight. Running up and down the hallways after a busy school day and eating at McDonald’s were regular happenings. I was healthy and had the thickest hair (which I was complimented on almost daily). Since I highly valued my academics and after-school pursuits, my weekly schedule was filled with countless hours of studying, nonstop practices, and regular involvement with my church. I maintained my grades in the classroom without fear of getting sick and missing important lectures and tests. I could get a minimal amount of sleep and still be capable of playing multiple volleyball games in a single week. Finding time to attend school, play sports, and volunteer in the community was simple. It was effortless to be a trustworthy student, teammate, and friend. But, in a blink of an eye, all of this changed.

The slow deterioration of my mental and physical well-being began in December 2019 during my Sophomore year of high school. I started to experience a great deal of pain while swallowing and digesting food. In addition, discoloration and numbness of my fingers and toes became a regular occurrence amidst the cold winter weather. My symptoms also made engaging in my already strenuous volleyball tournaments and winter track and field practices increasingly more difficult. Although the symptoms were irritating, causing a lack of energy and soundness required to participate fully, my parents and I brushed it off, believing acute acid reflux and a common problem known as Raynaud’s was to blame. I ingested over-the-counter remedies such as Tums and proceeded to partake in my sporting activities, ignoring the burning sensations that trickled from my throat to my stomach and the tingling of my hands and feet. However, as time passed, the symptoms worsened, and my weight decreased. When January 2020 came around, the painful sensations were almost impossible to ignore, so my parents and I decided to treat it seriously and go to my primary care doctor.

After being given a 99.9% chance of not discovering something further, I was referred to a rheumatologist who diagnosed me with a rare, incurable autoimmune disorder: Systemic Scleroderma. Sweat seeped through my pores, and thoughts of defeat flooded my mind as I nervously sat in the doctor’s office that day. The shocking news was the one thing my parents and I did not want to hear. This devastating and unpredictable chronic illness attacks the body, destroying one organ after the next. It breaks down the immune system and causes harm to healthy tissue. In my case, it went after my esophagus and digestive system first, giving me unbearable symptoms that could only be managed by medication. Since the medication is known to take months before a noticeable change in pain levels can occur, I was quickly administered the lifesaving drugs. But it was not soon enough, and my body continued to deteriorate.

For days I sat in my bedroom, deprived of the energy to do tasks as simple as walking to the living room or brushing my hair. I forced my body to take multiple naps to relieve the stinging sensation throughout my throat and intestines. I could not drink anything, including water, without causing the painful symptoms to flare. On top of that, I could only eat a few bites of chicken or a small apple a day. My mouth was dry from dehydration, and my stomach ached from the limited calories I could consume. My muscles were visibly shrinking, as shown by the stretch marks covering my legs. By June 2020, I had lost over 35 pounds, sending my body into a state of extreme malnourishment. I was hospitalized for a week and received a feeding tube that remained with me for seven long months. This new addition to my life was tremendously difficult to accept, hindering my ability to attend school, play sports, and do the things I loved the most. It took an enormous toll on not only my physical health but also my mental health.

As I impatiently waited for my body to return to normalcy, I sat around the house without anything to do. The isolation made me feel alone and unthought about. Although plenty of friends and family checked on me and sent gifts, I still believed the lie that nobody cared. This made my mind vulnerable to corruption and filled with many negative thoughts about myself and my future. When I began to miss countless days of school, I started to think that my classmates and teachers had forgotten about me. When I no longer had sporting pursuits on my schedule, I spent days bundled up in my tears, wondering when I would be able to return to the court and track. When I stopped attending my church, I assumed my friends and pastor thought I was an unfaithful Christian. I imagined everyone who looked my way saw an underweight girl with acne-riddled face, thin, brittle hair, and a disgusting yellow tube coming from her nose. Even though these were all false deceptions I fed to my mind, considering my circumstances, it was easier to believe them. And this was my problem. I listened to the lies instead of centering my attention on the truth.

The truth is, I was healing every day but refused to recognize it through my demanding conditions. That was until my friends, family, and faith in Jesus encouraged me to change my pessimistic mindset to a greater one. Talking about my emotions and expressing them through words undeniably helped me through my journey toward recovery. Furthermore, reading my bible and spending time with the Lord uplifted my spirits and made me realize that everything in life happens for a reason, even if we do not understand the purpose of it. The motivation gave me the strength to perceive my illness as a blessing and understand that things do get better; it just takes some time. As I started to believe in myself and my future plans, my feeble frame gained several pounds, and my painful symptoms subsided. By December 2020, the middle of my junior year, my medication was beginning to perform how it was supposed to, officially allowing me to say goodbye to my feeding tube.

Although I was not completely healed, my body was strong enough to return to routine activities. I was able to attend in-person classes, play my favorite sports, and go to youth group services once again. Despite my difficulties, I stayed at the top of my high school class as valedictorian. I was also named the Region high jump Champion and a member of the All-Area Volleyball team, something I have always dreamed of achieving. In addition, I received a small amounted dual-sport scholarship offer from my present-day university and am currently maintaining a 3.8 GPA while pursuing my biology major and psychology minor. Moreover, positively utilizing my illness, I had the opportunity to speak publicly about my challenges to my high school, my church family, and on a local sports network. Without my battle, I would have never seen these accomplishments as valuable as I do today.

I am who I am today because of my diagnosis. My new mindset and way of living allow me to appreciate every good thing this life has to offer. Even though I will continue to take medication and experience mild symptoms daily, I know now that my diagnosis is a truly humbling and inspiring incident. In the future, I wish to become a physician assistant specializing in pediatrics to help heal children like me one day. My battle with my chronic illness is not easy; therefore, employing myself in a position where I can mend and alter other individuals’ mindsets would make it all worthwhile.

I hope one day, my purpose in this unpredictable life will bloom into something beautiful, allowing my changed mindset and pursuits to speak of God’s goodness day in and day out.

–Makayla